advertisement
Closed Thread
 
Thread Tools Display Modes
Old 12-31-2008, 10:26 AM #1
lady_express_44's Avatar
lady_express_44 lady_express_44 is offline
Grand Magnate
 
Join Date: Aug 2006
Location: Vancouver, Canada
Posts: 3,300
15 yr Member
lady_express_44 lady_express_44 is offline
Grand Magnate
lady_express_44's Avatar
 
Join Date: Aug 2006
Location: Vancouver, Canada
Posts: 3,300
15 yr Member
Default

Chris, are you still out there?

Obviously either of our sets of numbers up for interpretation, but maybe we can figure this out once and for all if we work together on it.

Cherie
__________________
I am not a Neurologist, Physician, Nurse, or Hairdresser ... but I have learned that it is not such a great idea to give oneself a haircut after three margaritas
.
lady_express_44 is offline  
Old 12-31-2008, 12:56 PM #2
komokazi komokazi is offline
Member
 
Join Date: Dec 2008
Posts: 192
15 yr Member
komokazi komokazi is offline
Member
 
Join Date: Dec 2008
Posts: 192
15 yr Member
Default Still here Cherie.

Cherie,

Thanks for checking out my link. Please go back and look at my original point - There were zero patients at one year of Therapy on the slide until the Dec 07 numbers. This couldn't possibly be true if the original clinical trials exposure were included in the numbers. They did start new trials at the same time as the recommercialization.

When you think about it logically, it wouldn't make sense to include the original trial numbers with the post commercialization numbers as the circumstances surrounding treatment in the trials is substantially different from what they are trying to do in the commercialization setting.

Chris
komokazi is offline  
Old 12-31-2008, 01:52 PM #3
lady_express_44's Avatar
lady_express_44 lady_express_44 is offline
Grand Magnate
 
Join Date: Aug 2006
Location: Vancouver, Canada
Posts: 3,300
15 yr Member
lady_express_44 lady_express_44 is offline
Grand Magnate
lady_express_44's Avatar
 
Join Date: Aug 2006
Location: Vancouver, Canada
Posts: 3,300
15 yr Member
Default

Hi Chris,

I understand your point, but it doesn't explain mine.

Quote:
Originally Posted by lady_express_44 View Post
Chemar has asked that we don’t argue about this any more, and I will respect that. If you wish to debate your understanding of the numbers vs. what I have just provided . . . we can talk about this further by PM (or email, if you don’t have PM rights yet), I am happy to do that. Perhaps we can come to an agreement that way, then report back here ...?

Cherie
Can we talk about this offline, then hopefully come back with an answer?

Cherie
__________________
I am not a Neurologist, Physician, Nurse, or Hairdresser ... but I have learned that it is not such a great idea to give oneself a haircut after three margaritas
.
lady_express_44 is offline  
Old 12-31-2008, 03:38 PM #4
komokazi komokazi is offline
Member
 
Join Date: Dec 2008
Posts: 192
15 yr Member
komokazi komokazi is offline
Member
 
Join Date: Dec 2008
Posts: 192
15 yr Member
Default

Cherie,

I read through your link and all I can say is that the issue is as clear as mud. My link to Biogen's charts clearly shows that they did not include the prior clinical trials in their safety numbers reported there. With your link it is impossible to tell if the numbers exposed to Tysabri include the prior clinical trials or not.

With it being as clear as mud, it is clearly up for interpretation. I still believe my interpretation is correct as evidenced by my example but this is clearly not enough to sway you. (At the end of the day I live with this risk, literally as I'm taking the drug) We don't have to agree. The only takeaway we both should have from this discussion is that posting PML risk numbers is fraught with potential for error/misinterpretation. Is this fair for someone contemplating using this drug? The label says 1 in 1000 with new wording that the rate in monotherapy appears to be less than this. Let's let the regulators decide what the PML risk is in monotherapy based on the correct patient exposure data in monotherapy.

Chris
komokazi is offline  
"Thanks for this!" says:
Becca44 (12-31-2008), SallyC (12-31-2008)
Old 12-31-2008, 05:57 PM #5
4boysmom's Avatar
4boysmom 4boysmom is offline
Member
 
Join Date: Jan 2008
Location: Idaho
Posts: 164
15 yr Member
4boysmom 4boysmom is offline
Member
4boysmom's Avatar
 
Join Date: Jan 2008
Location: Idaho
Posts: 164
15 yr Member
Default

My experience with statistics is that they are usually biased. People use statistics that flatter themselves. We saw this all through the last presidential campaign. Each side used what stats best fit their agenda.

It is truly as Mark Twain said, "There are 3 kinds of lies; lies, damn lies and statistics."

What it boils down to is what each person with MS feels comfortable with. I could never be like Cherie, never having MRIs, not taking any DMD. I would find it difficult to look at my husband/children/grandchildren and say I didn't use what was available for me, so now you get to take care of me.

I fully realize that I may end up not being able to care for myself someday anyway, regardless of the treatments I'm using now. But at least, and I mean least, I can say I gave it my best shot with what information/medicine I had available to me at the time.

This is evident with me being on Tysabri, when really, I'm probably a very, very mild case of MS. I figure I want to stay that way. It helps that I have double insurance coverage, make good money, and so that is not an issue. I believe I prepared earlier in life to get to this stage, not knowing then that I'd be in this situation now.

If life hands me PML, so be it. I'm fully prepared to meet whatever challenges lie in front of me. I have faith in Tysabri. Sometimes that is better than statistics!!!
__________________
With adversity comes two choices: either let it make you BITTER, or let it make you BETTER! I choose the latter.
4boysmom is offline  
"Thanks for this!" says:
ewizabeth (12-31-2008)
Closed Thread


Posting Rules
You may not post new threads
You may not post replies
You may not post attachments
You may not edit your posts

BB code is On
Smilies are On
[IMG] code is On
HTML code is Off


Similar Threads
Thread Thread Starter Forum Replies Last Post
Patient dies on floor braingonebad Social Chat 12 07-07-2008 06:17 AM
Heart stem cell patient dies and MS woman wants refund. wannabe Multiple Sclerosis 0 09-01-2006 12:11 PM


All times are GMT -5. The time now is 09:27 AM.

Powered by vBulletin • Copyright ©2000 - 2024, Jelsoft Enterprises Ltd.

vBulletin Optimisation provided by vB Optimise v2.7.1 (Lite) - vBulletin Mods & Addons Copyright © 2024 DragonByte Technologies Ltd.
 

NeuroTalk Forums

Helping support those with neurological and related conditions.

 

The material on this site is for informational purposes only,
and is not a substitute for medical advice, diagnosis or treatment
provided by a qualified health care provider.


Always consult your doctor before trying anything you read here.